Did I say "thankful" for TPN????

Her is my skinny minny sweet Annabel. In less than a month she has gone from 33lbs. down to 29.2 lbs. I can't even remember dates any more or exactly when things occurred. She was removed from TPN in the later part of February when she was at TCH for yeast. My wish has always been for her to come off of TPN. The most pressing reason is that she had become septic 2 times in 2 months. The other reason being her liver and the effects the TPN/Liver has had since June, 2010. While she was hospitalized in February at TCH they made a really big push for food. They wanted her on Pediatric Compleat for the calories saying that she couldn't get enough from the breastmilk. I agreed to try the Pediatric Compleat again but only if it was 1/2 breast milk and 1/2 Compleat. It was too much too fast and even though I was skeptical I needed to let Annabel's body tell the doctors. Of course early March we ended up dehydrated because she couldn't stay on the compleat as it was tearing her gut up. While at the ER they learned our new PICC line wasn't working properly so we were admitted, line removed, femoral line place and then a few days later new picc line inserted and released.
We had our appt. in Houston with GI. I was so ready to beg to get back on the TPN as to I could see her little body weak and frail. Her arms and legs were so thin and her face seemed so tiny. Her coloring was pale and she just didn't have the energy. We were having to go easy on the feeds again and I would only agree to begin the breast milk.
Just recently Annabel was on the vancamycin for her UTI and the Fluconazol for the Yeast. Within five days of finishing the vancamycin her culture grew another bacteria so Dr. B placed her on Bactrim which for a couple days appeared to be clearing the urine. On Tuesday Annabel began running a fever not too much over 101. She was also beginning with a cough and a wet nose so we just thought she was getting a cold assuming the UTI was being taken care of by the Bactrim. By Wednesday morning her urine was having troubling coming through the catheter and she was vomiting. We were suppose to see Dr. B for follow up from the hospital the next day but opted to call for appt. on Wednesday. It was found Annabel's urine was worse and she needed to be on IV antibiotics again. A culture was drawn and sent off and should have results Monday. Dr. B is guessing the bacteria that she was on the vancamycin for is back/or not clear from the round of vanc. It is getting so frustrating with these UTI's but anyone who has followed us before know we have been here before.
So with all this said I find myself rejoicing in the TPN/Lipids running through her veins once again. Just since being placed on it this week I can see the weight returning and her energy returning. Yes, we are still giving her the breast milk and will continue. Annabel is going on 9 weeks of breastmilk and not having to take any laxatives/enemas. This is another blessing to us. When she is placed on laxative her gut swells so big.
I haven't written recently due to the fact that I feel like a broken record. I don't want to complain because Annabel is still so happy. We wish she were free of pain but I am thankful that her time of pain seems to be limited and quickly resolved. I don't know what the answer is to the excess of antibiotics. I know she needs to stay off but the option is pain for her/or the possibility of becoming septic having this central line is tough. We realize with the many antibiotics the risk for yeast to occur again.
There is so much I am thankful for at this time. I have help (nurses) during the days and also three nights a week. I have found that 3 good nights of sleep get me through my week. I know without a doubt when I am up the other nights that I will have a reprieve for 3 other nights.
I am thankful for Dr. B and her patience and understanding of Annabel and her journey (of course, patience with her crazy momma) and Dr. C in Houston who continues to try to figure out Annabel and her gut issues. I am so thankful for my family who loves Annabel and comes to see her each day. She truly is the sunshine in each one of our days!
P.S. There has been some true Angel's who have/are providing Annabel with some much needed breast milk. The milk bank is critically low and we have not been able to receive much milk from them. I won't mention names of the donors in case they don't want to be mentioned but please know that each time I open a fresh bag I am thinking and praying for you and your child.

Home again!!!

Annabel is doing great! We are home and she has her new picc line. We are going to resume TPN hoping just for night time and feed her at a slower schedule of just breast milk! Thank you for the prayers, so I was late in posting. She had a busy day at hospital going down for the line then getting everything together for discharge.

Can I explain?

PLEASE EXCUSE THIS WRITING..trying to type on iPad, very tired. Hopefully make more sense tomorrow.

Probably not! The last few days have become hard to get feeds in. She is becoming more uncomfortable each day with feed. We are draining more bile at the end of the day. We have been free of gagging/retching but is coming back. Last night we ran Pedialye at a low rate.We realize how uncomfortable she has become with her sleep as last night on Pedialyte she slept continuously. I have been wanting to do what the doctor sent her home with but in my heart I knew it wasn't working. We were going to GI doctor in Houston tomorrow so was just trying to make it to this appointment. Our nurse was drawing labs this morning and she was able to flush but could get almost no blood return. So Houston said probably dehydrated or line migrated out of place.She did fluids due to not getting her feeds in. Also her line was in close but not ideal. it was wedge against the tissue so when they tried to pull the tissue pulled to the line and made blood draws hard. When you put in TPN and certain antibiotics they are toxic to tissue and will cause damage to the tissue. There is also some question to how much air/gas pushing up on her heart and lungs and causing these lines to not function properly. There was talk about SVC and running some test for this. Everyone from here to Houston says her veins are mostly inaccessible for much use.

Annabel has never been put to sleep locally. We do not have pediatric anesthesia here so the need to travel to Houston due to poor airway issue. We had to decide something very quickly. I remembered my neighbor was anestiologist and he is always asking about Annabel. He said he worked on child so I request him. He came right away. He made a plan and decided to use gas and not risk airway. The procedure with the femoral line is quick. She stayed in recovery longer and was so alert when we were able to see here. I just wasn't ready for her to return to Houston. Everyone here knows her so well. I must say I am spoiled here. Tonight I don't have to endure an uncomfortable couch but an adjustable hospital bed. We are taken care of by people who have known her since birth and become very dear friends. We are blessed.

Not sure if any of this makes sense. I know I understand but have trouble communicating it.